| Autor: |
Schut AW; Department of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.; Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands., Lidington E; Sarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK., Timbergen MJM; Department of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.; Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands., Younger E; Sarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK., van der Graaf WTA; Department of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.; Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands., van Houdt WJ; Department of Surgical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands., Bonenkamp JJ; Department of Surgical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands., Jones RL; Sarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.; Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London SM2 5NG, UK., Grünhagen DJ; Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands., Sleijfer S; Department of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands., Verhoef C; Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands., Gennatas S; Sarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.; Department of Medical Oncology, Guy's and St Thomas' NHS Foundation Trust, London SE1 9RT, UK., Husson O; Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.; Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.; Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London SM2 5NG, UK. |
| Abstrakt: |
Sporadic desmoid-type fibromatosis (DTF) is a rare, non-metastasising soft-tissue tumour. Patients can experience a variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, which negatively impacts health-related quality of life (HRQoL). These DTF-specific issues are not captured by generic HRQoL tools. A 102-item provisional DTF-specific HRQoL tool, the DTF-QoL, was previously developed. The aim of this study was to pre-test the psychometric properties of the DTF-QoL by administering it together with the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) to 236 DTF patients from the United Kingdom and the Netherlands. Construct validity and reliability were determined based on factor analysis, multi-trait scaling analysis, Cronbach's alpha, and correlations with the EORTC QLQ-C30 scales. Ninety-six items were selected, conceptualised into three symptom scales, eleven disease-impact scales and six single items, together forming the final DTF-QoL. Scaling assumptions were fully or moderately met for ten out of fourteen scales. Cronbach's alpha ranged from 0.551-0.908. Most scales of the DTF-QoL were weakly or moderately correlated with the EORTC QLQ-C30. The DTF-QoL is a promising tool capturing the whole spectrum of DTF-specific issues. Implementation of the DTF-QoL in research and clinical practice will help to personalise HRQoL measurement and clinical care for DTF patients. |
